New sufferer, I think :-( Not a fan of Co... - Endometriosis UK

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New sufferer, I think :-( Not a fan of Codeine Phosphate

pinklady82 profile image
11 Replies

Hello everyone :-)

I will try to keep this brief. I have always suffered from painful periods, the last five years have been bad and the last two years have been really, really bad.

I have been to see 3 GP'S at my surgery, they've all poo pooed my symptoms a couple gave me some pain meds and the other wanted me to go on the pill. I don't really want to go on the pill and the pain pills barely touch the discomfort, so little in fact that I've had to top up with crazy amounts of ibruprofen and cuprofen. It all culminated with me collapsing at work and being taken to the hospital, I now have a Gynecological appointment later this month which I'm hoping will lead to some answers.

In the mean time I've been given the usual suspects; mefenamic acid and Tranexamic acid. Also codeine phosphate, but I find I feel really odd with those, even days after taking them, does any one else have weird side effects with CP?

Thanks for reading :-)

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11 Replies
Kelzibubble13 profile image
Kelzibubble13

Hey, getting a diagnosis can be a bit of a nightmare. I have been taking co-codamol for 2 years now for the pain, and how I feel with it differs day to day. Some days I feel like a full on space cadet and other days I am totally fine. I just limit what I do on the bad days (like avoiding using the buffers and power drills at college! It does get better slowly :)

pinklady82 profile image
pinklady82 in reply to Kelzibubble13

Thanks Kelzibubble13, Yes when I first looked into the possibility that it could be endo I was shocked and saddened by so many stories of misdiagnosing or delayed diagnosis, I think we inherently think periods are painful and so just get on with things but when I was having to take 10-12 pain killer tablets on top of the mefenamic acid I'd been given I knew it was not right. Do you get pain all through the month?

Kelzibubble13 profile image
Kelzibubble13 in reply to pinklady82

Yeah my pain is pretty much all the time, tho I am having a good day today which is pretty nice! I've spent it doing housework which feels like a bit of a waste of feeling well for a change! I've had terrible periods since the age of 12, but when I went on the pill at 16 it got better. I was only diagnosed at 28 because I was unable to get pregnant and started getting terrible pain. I get my worst pain overnight/early hours of the morning when I wake up needing a wee so I have been diagnosed gabapentin to help with that. That might be worth you asking about as I was told you can also take them during the day.

Beau83 profile image
Beau83

It can be trial and error when it comes to drugs- I would ask to try something else if the codeine phosphate makes you ill. Perhaps an anti-inflammatory like naproxen or diclofenac or a different pain killer like co-codamol, co-dydramol or tramadol? Many do contain codeine but there are various levels- for example co-codamol can make me feel woozy but I am fine with tramadol (which is stronger).

pinklady82 profile image
pinklady82 in reply to Beau83

Yes the codeine I can tell are very strong and I don't mind a little wooziness if it helps with the pain. But I found that I was feeling paranoid and quite moody after a few days of taking them and then for at least a week afterwards, didn't know painkillers did that!

Chrissie66 profile image
Chrissie66

I hate codeine with a vengeance. I take pethidine for my pain which makes me woozy but I can cope with it - anything with codeine in, like you pinklady, makes me feel odd for days. As if I have little electric shocks going off all over my body. It stops me sleeping and makes me feel really edgy.

It is just trial and error with painkillers. According to the pharmacist who dispenses it, pethidine 'doesn't work for endometriosis'. Except it does, for me, and what's more it's the only thing that touches it.

pinklady82 profile image
pinklady82 in reply to Chrissie66

I was reading up on it and it stops certain pain signals from reaching the brain or something lol something powerful enough to do that must have the weirdest side effects, I'm glad it's not just me, if you know what I mean :-)

Chrissie66 profile image
Chrissie66 in reply to pinklady82

Yes, I know what you mean :D

melodyxo profile image
melodyxo

Also has major mood problems with codeine, but it is one of the only things that work on the pain so will take it on a really bad day! I've started taking tramadol recently but that makes me itch like mad! I didn't realise they could do that either until I spoke to my mum, who ended up addicted to it for many years.. always wondered why she was such a moody so and so lol!

borderali profile image
borderali

Good luck with the appointment, one word of advice keep pushing them for diagnoses, if your not getting anywhere fast then think about going private. I went private for the first consultation and it was the best 200 pound I ever spent. They refered me back to NHS for all the treatment etc. Good luck and have a serious thought bout a private consult.

Lisawright profile image
Lisawright

av tried all those u are on they only help for a limited time av had tramadol cocodomal ibrofen u name it av tried now am on dihdrocodeine 30mg to take 2 tablets four times a day with ibrofen still dont help am bk at docs tomoz a do hope u can get something that can help aye went for my forst scan today and was told i have no fabroids or cysts a asked wht was wrong and she said most likely Endometriosis but will have to wait on my gyngecoligist to discuss this thats not till 13/12/2013 no one seems to understand on the medical side how much pain this disease or wht ever it is is palying haffic with our lives ,sorry for going on and on just so fed up with this xxx

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